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TOTAL COLECTOMY PART 35 THREAD 14

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Posted 7/7/2010 4:44 PM (GMT 0)
Allie,

Glad they are keeping Lizzie to get a handle on the pain. Sounds like they are getting the idea that they need to fully diagnose and straighten her out before sending her home again. Praises on them for doing this. This had to be done. So more time for her there is a good thing.

Hodaya,
Good luck, you will be amazed at how easy you can poop. You'll get used to the stoma and be fine.

Jenise,

Good luck with surgery. I'm finally buckling down packing. Gotta take a nap with the cat. Have been at it for 5 hours now. auuugh! Wish me luck, hope I stay well as I have been.

Rosemary
Posted 7/7/2010 5:11 PM (GMT 0)
Hodaya,

Good luck honey!! Will be waiting to hear how GREAT you're feeling:)
Posted 7/7/2010 5:23 PM (GMT 0)
oh... d'you guys know how much i love you..??
Posted 7/7/2010 5:28 PM (GMT 0)
Hi girls,

Had a nice post to everyone the other night the poof it was gone and I didn't really feel like starting over. 

Hodaya-Been praying for you sooooo much and will continue to pray for a successful surgery tomorrow.  Am hoping that everything works out and that you can finally live the life you so deserve!  Praying for a quick and painfree recovery my love:)  Love you to pieces and will talk with you soon.

Tracy-So happy you are doing so  well and adjusting so well!  You have waited so long and suffered so much that it's great to read about all your success:) Always in my prayers and sending you love:)

Barb-Glad your surgery went well; the best advice I can give you is to stick with the low residue diet.  I continue to use this diet and my surgery was almost 2 yrs ago (7/17/08); my gi had me try some fresh fruit and it caused severe D so he has had me stick with the diet.  I still go between 3-10 xs a day not large amounts.  The only time I went once a day was this past year when I was taking 6 vicodin a day for kidney issues.  So stick to the diet the best you can, it really does help.  I haven't had any complications at all from this surgery:)

Val-I wish you the very best with your surgery!  I do think your dr is pushing it with saying you will be back to work in 3 weeks though, this is a very big surgery either way you have it.  Mine was an open and I went back in 6 weeks but I was totally exhausted and didn't do ANYTHING once I came home, thankfully my husband did it ALL:)  It took almost a year to fully recover and working full-time took that much more out of me.  Though this was the best choice I ever made!!!!!!

Rosemary-Have a GREAT trip and stay healthy!!!!:)

Sarah, Lori, Janie, Jenise, Marisa and all the others I wish you the very best, you are always in my prayers and I hope that you can enjoy some of the sunshine:)

I am at my daughter's house in Myrtle Beach for the month of July and the hardest thing I have to do each day is decide if I'm going to the beach or the pool for the day, unfortunately my daughter has to work everyday from either 10 or 11 til 7 but it gives me plently of much needed me time:)  Her next day off is the 14th so I have lots of days to myself and lots of books to read :)

Well I'm off to the pool:)  have a wonderful day and as always, I will be thinking and praying for each and every one of you.

Peace and prayers,

Judy

 

Posted 7/7/2010 6:58 PM (GMT 0)
Judy,

Thanks! Yes, I have stuck to the low residue diet for the most part. I have felt good, and I think I may have been eating too much white bread cause I feel like I am gaining a little weight back - ha ha ha...But truely so far I am feeling a thousand times better than I did before the surgery. I like the foods on the low residue diet list so I am going to ty to just stick to that for the most pat, even after some time passes. I do like vegatables a lot and was sad to see that was not on the list....if I cook them up real good ae vegatables ok? What has been your experience.

I am anxious to exercise again too, I can weight but it has only been 2 weeks since surgery so I know I shouldnt get ahead of myself yet. Once I am able to though, I am going to start!

Thanks for your suggestions and kind words!
Posted 7/7/2010 9:46 PM (GMT 0)
Hi Barb,

To be honest I can't eat a lot of cooked veggies as I will have D but I try to eat at least one serving a day; this even causes problems after the 3rd or 4th day in a row.  I usually eat a small peach cup every day and always  about a half cup of wegman's super yogurt every day a per my gi.  I also take 2 probiotics everyday since I c diff last year.  As for the exercise, it took like almost nine months for me to start exercising but you've got to remember that I went into this being not well and I've had surgery every year since 2003 so I wasn't in any physical shape to to anything.  Prior to 2003 I was in good shape, ran 6 miles a day a worked out 5 days a week so as you can see my body has been through h***!!!!! especially this past year with all the kidney procedures and c diff.  I would not push the exercise too soon as people who have had this surgery are prone to hernias so let your body heal REALLY well even if it is killing you to get back to exercising; you can always get the muscle tone back but you surely DON'T want more surgery!!!!!!

Best to you and REST and let yourself heal:)

Judy

Posted 7/8/2010 3:01 AM (GMT 0)
Hi all my dear friends! And welcome Carly!

I have been going like crazy the last month or so. We have been on two camping trips, a lot of dirtbike riding, fishing, and hiking. It has been so great to feel like I have my life back.

Hodaya, good luck to you. Tomorrow is surgery day, right? Wish you all the best and a speedy recovery. Love you!

Tried pizza for the first time since surgery the other day and I actually did quite well. Only had one piece but I felt pretty good. I do not think I will ever try fruit and veggies though. Just heard too many horror stories! I have put on about 20 pounds since last summer. Its kinda hard for me cuz I was so used to being 115 lbs and now I feel like a fat old piece of crap!! I know Im not but still trying to get used to looking healthy I guess.

Well, having family over tonite so better go be social. Love you all and think of all of you daily.
Posted 7/8/2010 3:23 AM (GMT 0)
Judy - Thanks for the well wishes and the encouragement.  Enjoy your vacation and stay cool!

Hodaya - Praying for you. 

Barb - It's wonderful to know that you are doing so well this soon after surgery.  Please forgive me but I don't remember if you work outside the home or not.  If you do, how long do you think it will be before you will be going back?  If not, how long until you resume your household responsibilities?  You seem to have lots of energy and a positive outlook.

Posted 7/8/2010 3:49 AM (GMT 0)
hi all, i'm leaving to the hosp in a few hrs, it's 630 am now here and i'm leaving at 1230, the surgery supposed to be at around 1700. thanks everyone for the well wishes :) Judy, love you endlessly....... glad you're finally having some time just to yourself and have some fun and relax!!!!! you SOOOOO deserve it after all you've been through!! Marisa, so good to hear you're doing so well and having fun too :):) all of that activity sounds like SOOOO much fun!! and OMG...... CONGRATS on the pizza!!!!! LOL so happy for you, girlie!! i actually did eat lettus and cabbage (sp) on several ocations, i think it slowed me down a bit, but nothing really bad happened, but as you know, everyone is different, so i don't know, but most of the time i prefer to avoid those. love you forever girlfriend! Val, thanks for the prayers, your surgery is also getting so close, i wish you ALL THE BEST honey, and for this to be the beginning of a whole new better life for you..... the best!! Tracy, hope you're well and getting better every day! having the surgery same hosp as before, will have my own computer there with internet, so will try to check in.
Posted 7/8/2010 4:22 AM (GMT 0)
Hodaya, good luck....I am praying for you. I truly think this surgery will be lots easier than the total colectomy....I can't wait to hear from you. Remember, when you 1st see your stoma, it will give you the creeps....but, you will get used to it very quickly and will begin to look at your stoma as your friend. I am in no hurry to rush and have the stoma taken down. I am actually quite surprised at how much better I feel and have even considered just keeping the stoma forever. LOL

Please post as soon as you are able....

I spoke with Lizzie earlier and she was on her way home. Please pray that she will be able to stay home and that she gets better everyday.
Posted 7/8/2010 4:35 AM (GMT 0)
thanks Tracy, you are so so sweet! i'm scared and nausious, i don't know why the nausea. so glad Lizzie is going home YEAH! she's always in my prayers.
Posted 7/8/2010 5:05 AM (GMT 0)
Good Luck Hodaya-Thanks for all the support and knowledge you share.
Posted 7/8/2010 5:41 AM (GMT 0)
Hodaya.......Good luck to you girlie! I can't wait to hear how you feel. I am sure everything will be just fine!

I am glad Lizzie is going home. You always feel so much better at home even when things aren't perfect. Hope you continue to do well honey!
Posted 7/8/2010 7:43 AM (GMT 0)

Hodaya, so many prayers for you! Can't wait to hear all about how amazing you feel, and how it feels to have so much work lifted from your shoulders!

 

Tracy, my surgeon said the same thing! He has had many patients opt to keep their stoma forever and not go for reattachment because life was so easy.

 

Allie

Posted 7/8/2010 10:10 AM (GMT 0)

Ladies, wherever you are, grab the person nearest to you and hit your knees. Lizzie needs a miracle now more than ever. She did get to come home on Wednesday. She arrived back home about 6:30 PM. A couple hours later, however, she tried to intubate and ended up with the same devastating set of symptoms that she had the last time her valve slipped. She has been in the ER since about 2:00 AM, she is doubled over in pain, and her transport back to Cleveland is scheduled for 7:30 AM (it is currently 6:00 AM). She has not been able to empty since 8:00 PM, and the drive to Cleveland is a full five hours.

 

Hodaya, Lizzie tried to get a hold of you, but there wasn't a response. She wishes and sends you all her love and prayers for your surgery today!

 

Rosemary, Lizzie says it was a sweet e-mail, she just has not been able to get on a computer to respond, and it's hard on her phone.

 

Time to kick the prayers up about a million notches.

 

Love to you all,

 

Allie

Posted 7/8/2010 12:05 PM (GMT 0)
Praying now for both Lizzie and Hodaya . . . .

Thank you for the update Allie.

(((((Hodaya)))))
Posted 7/8/2010 12:12 PM (GMT 0)
Hodaya.. praying for you! Can't wait to hear from you.. post as soon as you feel up to it!

Allie, OMG.. how can this happen! ??? Poor Lizzie.

Marisa, good to hear from you! Sounds like your life is back and fun of adventures.. happy for you! Yum on the pizza. I really can eat anything, but I d have to watch my weight!

Judy, always wonderful to hear from you! Enjoy your vacation, you really deserve it after all you have been through each summer!
Posted 7/8/2010 3:37 PM (GMT 0)
Hodaya,

Best wishes. We're rooting for you. You can do this!

Allie.

OMG from me too about Lizzie's valve.........Thanks for the communication re: my email to Lizzie, I understand why she could not get back to me. I will pray for her big time. I pray God sends the correct message to her docs (whatever that may be) and that whatever should be done for her will be so that she can recover from all of this. This poor girl. Prayers continue.

Rosemary
Posted 7/8/2010 8:00 PM (GMT 0)
Anyone with an ileostomy of a long time (not newbies);

How MUCH is it NORMAL for an ileostomy to slow down over time? Today for lunch I had a hot fudge sundae and I only put out 50 cc's. I know we slow over time, but what is normal? Anyone know?

Thanks, Rosemary
Posted 7/9/2010 3:50 PM (GMT 0)
hey eveyone, thanks so much for everyone's love and prayers! you guys are the best! i'm at the hospital, surgery went well and im not freaked out at all by the stoma, i like it actually. BUT im SO FURIOUS!!!! i've agreed with my surgoen that what we're doing is an end ileo, but today when i took a shower and took everything off, it was pretty obvious he did me a loop ileo and i'm just so frustrated and furious!!!!!! i specifically asked for an end. i have to what i'm going to do. anyway i'm doing good, pain is managable and i've alres\ady started liquids. bowels hasn't woken up yet, so still waiting. will be in touch.
Posted 7/9/2010 3:56 PM (GMT 0)
Hodaya!!!!!! So glad to hear from you! I am so glad you aren't in horrible pain and that the surgery went good. I would talk to your doctor for sure. I am confused though. What is an end illeostomy and a loop illeostomy. I thought there was only one. Hope you continue to feel well.
Posted 7/9/2010 4:27 PM (GMT 0)
Hi Hodaya,

Glad to hear from you. WOW a loop instead of an end! WHOA! heads will roll! You were planning permanent ileostomy (end) and he obviously was planning temporary (loop). WHOA! Good luck with this show down. Of course it is possible to keep a loop permanently but there are some risks. One is that poop might flow back down through the part of the loop that (I was going to say is hooked to the colon) but you have no colon. Ohhhhhhh, so maybe that is why he did the loop. Making a loop ileostomy is much easier than making an end ileostomy.

Ask him where poop might flow back down into if it went down the wrong end of the loop or (seeing as you have no colon) would that not happen?

That is why my doc made me an end ileostomy to avoid this complication as I still have my colon though can't use it due to my injury.

Do ask about this. Now I am thinking he may have done the easiest, best, and least invasive thing for you that will work permanently in your colon-less state.

Don't rush liquid; most places only give ice chips until guts wake up. Good luck. Glad to hear from you. Rosemary
Posted 7/9/2010 4:28 PM (GMT 0)
I just drank Gator Ade and had a ton of output. I must be sugar and sugar substitute sensitive. I gotta stick to water. Rosemary
Posted 7/9/2010 5:22 PM (GMT 0)
Hi Hodaya!  It's wonderful to see you posting already!  I'm grateful that your pain is under control and that you have already been allowed to have liquids.  But that end versus loop ileo is a bummer.  You would think that your surgeon would have gone by your wishes unless he explained why he preferred one procedure over the other, AND gotten your approval.  When my surgeon said he was going to do a subtotal colectomy, I asked him why because I wanted a total.  His explaination and reasoning were sound so I agreed to do it his way. 

Please keep us updated.

Val

Posted 7/9/2010 5:40 PM (GMT 0)
Hodaya, so glad to hear from you girl. I am so proud that you weren't repulsed at the sight of your stoma like I was. :(

I am not sure about the loop being done instead of the end, but I am sue your surgeon has a good reason for doing it this way. I am just wondering if he did it temporary just in case you wanted to have it taken down someday. I am anxious to hear what he has to say about this.

How is your pain level? Did they give you a pain pump? Has the ileo started putting out poop yet? Just remember to walk alot and to introduce food slowly....

Val, so your surgery is next, huh? Wow, so many of us on this board are having surgery back to back....why is your colectomy going to be a subtotal? Just curious....how much does he plan to leave?
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